What Next?

I’m at a place in this journey in which I don’t know what to do or to expect? I tell others that I am at peace with the idea of me dying in the next few years, but the truth is that I am scared. It’s not the actual dying process that scares me, it is the knowledge of knowing that I am going to be leaving my wife all alone. We have the house to ourselves now that all three of the kids are living on their own and are self sufficient, and we get this bomb dropped on us. In many respects I still can’t believe that have Dementia and that my brain is slowly dying. I am afraid for my wife and need her to know that I will fight this disease forcefully and heroically as humanly possible. I have never been a quitter and have no plans to start now.

No disease is fair, racially motivated, or separated. This disease targets anyone and apparently at years younger than anyone first thought. I have always believed that Alzhiemers and Dementia only occurred in older people of seventy years or older. This has to be a mistake, was my first reaction. I was 48 years old, physically fit, and still able to take on the world, or so I thought. I’m not ready.

We are now considering purchasing a second house that is almost next to my wife’s school. Her idea is that she could walk home and check on me at lunch time every day and we wouldn’t have to fight these rough Maine winters and an eight hundred foot driveway. This would allow us to live  on the mountain in the good months and the other house in the winter. We are both very hopeful that I can stay at home for the next couple of years at least. I hope to be of sound mind and able to express myself for as long as I can, for my wife and children, and also for myself. I have built my life becoming who I am, only to become someone I don’t want to be. The horror stories I read about is what I dread the most. I am so afraid of saying or doing anything that is out of character for me. Ultimately, I don’t have a choice.

I have subtle attributes of the disease and quite frankly I don’t notice them unless someone points them out to me. I might forget someone’s name today but remember it tomorrow without a second thought. I have forgotten how to tie my shoelaces, something that I have done a million times before but now can’t remember. My wife has put new elastic laces in all of my shoes so now the only thing I have to do is slide my foot in them. They are so easy I wish I had known about them before I got dementia.

As I try to simplify my yard, lawns, and gardens I am trying to do it so they are as maintenance free as possible. I have cut back on lawn sizes this year as this may be the last year that I am able to do them mself. This makes me sad as it is one of the things that I enjoy most. While on my mower, I am not bothered by the phone, people in general or any other distractions. On the other hand, if we get another house I would now have two yards to maintain. Sometimes I feel like I am on a treadmill and going no where.  It’s really hard to know for sure what to do to prepare, yet in some ways it is good that I have the time to so.

In some twisted way I feel fortunate to have the time to get my affairs in order before I get to the point of not realizing either way. I took the time with my wife to shop for a gravestone and we are having it placed in August after it gets here from Norway. We have taken the necessary steps with Elder Care lawyers and I have started writing down the things I want done at my funeral, right down to the music that will and will not be played. This is afterall, about me, so why wouldn’t I want to be a part of the planning?

It has been a year now since I was diagnosed and as I think about the changes that I have noticed I have to wonder what another year is going to bring? This journey is not an easy one by any stretch of the imagination. It is so very subtle, yet 100% percent deadly. First of your mind, and then of your body, and finally your life. The stages are somewhat the same for everyone, though the speed in which it progresses can be very different. I’m going to be fifty years old next year and know that I will never see sixty, and quite possibly mid fifties. From what I understand I won’t realize it, though that brings very little comfort.  

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2 thoughts on “What Next?

  1. One day at a time, my sweet baby. Nobody knows how long they have in this world. We need to just do our best to plan for the future, and live for the day. We love you so very much, and thank God that we will one day reunite in heaven for all eternity. What a wonderful promise from our maker. ❤

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